Hi all! When this whole weird constellation of symptoms appeared nearly three years ago, one of the weirdest ones was a burning sensation in my face. It’s very sporatic. Comes and goes. But lately it’s been worse than usual. Actually woke me up last night. It feels like a sunburn on my face. It’s my WHOLE face, not just one side. It’s my only bilateral facial symptom. Which is making me wonder if it’s part of the whole Eagles thing, or if it’s something else entirely. Anybody else experience facial burning sensation?
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Hi Bopper,
I haven’t heard of this specific symptom as being related to ES but sometimes that sort of problem is caused by hormonal fluctuations. I used to get them as a teenager then later in my 50s. Thankfully, I haven’t had that problem in several years. If it gets to be really uncomfortable, it would be worth seeing your doctor.
Nerve pain typically involves, tingling, burning (usually w/o the skin flushing), numbness, or “lightning bolt” type pain.
Thanks. Yeah, there’s sometimes something that feels like a hot flash that comes with it, but that comes and goes quickly, and this stays for days. There is no flushing that comes with it. Skin looks totally normal. Just feels like it’s on fire!!!
Hmmm…could be your facial nerve or trigeminal or a combination of the two. Between them they cover most of the face. If it gets really bothersome, a nerve pain medication might help calm the symptoms.
I’ve forgotten whether or not you have surgery coming up. Certainly getting your styloid(s) removed would help if it’s a nerve issue. I had such a variety of symptoms (some of them odd) & all of them went away after my styloids were gone. It was almost miraculous!
Still deciding about surgery. I was just at the point where I had decided my symptoms weren’t THAT bad. Then I saw Dr. Hepworth again, and he made a pretty good case for getting it done. Plus symptoms have been getting worse. He ordered an MRV for next week. I think I’m getting closer. I’m realizing that it’s taking a lot of energy and “brain space” just to deal with the symptoms every day. The face burning is part of it. It started at the same time as everything else, so I’m thinking surgery MIGHT help. I just have some insurance issues to work through.
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Glad your making it through your evaluation and considerations as to whether do the surgery. Everyone gets there (or not) in their own time. I think sometimes we live with these symptoms so long, unless they get severe, we ignore them and minimize their impact on our daily lives.Good luck on working out all the insurance issues. That can be a gauntlet.
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I have this exact thing! It’s excruciating! How are you now?
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@Hopefulhermit - This discussion is 5 years old so @Bopper may not reply, but I hope she will.
Since burning sensations are a symptom of nerve irritation or damage, getting the source of the irritation removed usually helps the symptoms to resolve over time.
Thanks for responding. I guess styloidectomy is my only hope then.
I wouldn’t say that. I had a styloidectomy with Dr. Hepworth three years ago. It improved nothing, and actually made facial symptoms worse. The burning has been settling down over time with various modalities (osteopathic treatments, visceral physical therapy, low dose Naltrexone.) If the styloid isn’t the problem, a styloidecomy will only complicate things.
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Thank you for responding! Both IJV are 85% occluded by the styloids, but it’s hard to tell if that’s actually causing the pain or not.
They said mine was occluded by the styloids as well. I have no idea if that was true, but after the styloidectomy I was told that the left IJV was 100% blocked, but now they thought the blockage was internal. Referred me for a stent with Dr. Fargen. I cancelled because my father died. Subsequent follow up imaging showed no blockage whatsoever. So I would be careful what to believe. Ironically, my face is burning a little right now . . .
That’s crazy. I was told by Dr. Hauser that both were occluded and Dr. Osborne confirms. I just had Hepwroth’s ultrasound protocol done and they said only one was occluded. So I get what you’re saying! I’m sorry your face is burning. Does anything help? I’m trying LDN today.
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@Hopefulhermit - When facing a major surgery like that for IJV decompression/styloidectomy, it’s very wise to get at least a second opinion so you can make a more informed decision about which approach & which doctor seems right for you.
Dr. Nakaji in Phoenix has an excellent reputation for dealing w/ VES w/ IJV compression as does Dr. Costantino in NY. Closer to you is Dr. Damrose at Stanford. It would be reasonable for you to choose at least one of those doctors to have a consult with before committing to surgery.
•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772
•Dr. Edward Joseph Damrose, 801 Welch Rd, Palo Alto, CA 1-650-723-5281 Edward J. Damrose, MD, FACS | Stanford Health Care
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
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@Bopper - Thank you for coming back with an update. I recalled you didn’t have a great outcome from your surgery but forgot that you got mixed information post op. It’s possible it took a while for your IJV to open fully after surgery so your initial scan results didn’t show it open but a later one did.
I’m glad you’ve pursued other avenues for dealing w/ the burning in your face & that they are helping reduce it. I can imagine it was very frustrating not to get resolution by having your styloid(s) removed/IJV decompressed.
It can take having a styloidectomy to rule out at least one possible cause of nerve related symptoms especially when it’s symptoms potentially caused by nerves the styloids can irritate. It’s unfortunate that it’s a major surgery that also requires time for recovery.
Did you get any resolution of symptoms the IJV compression was causing or are you questioning whether you actually had IJV compression?
Thank you. I consulted with Dr. Hepworth’s NP and she said I should definitely have the surgery based on my neck CT with contrast because she could see they were both 85% occluded. She then suggested an ultrasound using his protocol and the report said only one IJV was occluded. I emailed her the report asking for a zoom with Dr. Hepworth but have yet to hear back. Perhaps I should also consult with one of your referrals?
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You should definitely have a consult with one of the other doctors I named.
I had an MRV & CTA in 2022 neither of which, according to the radiology reports, showed IJV compression. When I had my scans converted to 3D, visually, bilateral IJV compression could be seen - left side the IJV was squashed between C1 & the remains of my styloid (prior styloidectomy in 2015) & right side was soft tissue compression by my parotid gland. In 2024, I saw NP Sarah Reynolds, was sent for the prescribed ultrasound & then saw Dr. Hepworth a week later. After viewing my US results & scans, he thought the R side was worse than the L, so he sent me for an angio/venogram to clarify. It revealed the R was fine & the L was not. My symptoms were all on the L so this was validating for me, but curious that the US showed compression on the right but the venogram showed none. Sigh…
It’s my opinion that all of these scans are helpful but are still an inexact science thus the need to get more than one doctor’s perspective.
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Ugh, that is SO frustrating. Do you know if either the AZ or Palo Alto doctors do zoom calls?
@Hopefulhermit - I think both require in-person initial consults but you can call their offices to verify that.
I’m sorry that your surgery didn’t help with the pain @Bopper , glad you’re finding some other treatments which are helping…
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